Learning to live with a debilitating disease
I’m 21 years-old. For most people my age you might expect a lifestyle of partying and fun. But, my life is far from this. It’s full of isolation, change and constant worrying. When I do eventually get out to enjoy myself, I have paranoid parents.
I was diagnosed with a rare disease called Langerhans Cell Histiocytosis (LCH) when I was three years-old. Showing lesions in my bones and skin, this disease affected my pituitary gland (situated in the brain), resulting in a condition called Diabetes Insipidus.
This disease is like cancer. It forms and grows identically. The only difference is that my condition isn’t life-threatening, but my God is it life-altering. After chemotherapy treatment and ten years in remission, this disorder seems like only small hiccup in my life.
Just after my thirteenth birthday my parents noticed my walking had changed. I was taken to doctors, had X-rays, assessments, MRI and CT scans, but nothing seemed out of the ordinary. It wasn’t until I was 15 years-old that doctors first noticed something unusual.
I had been trying to live an ordinary life with this condition getting worse. Then, I was diagnosed with a mobility disorder stemming from the disease I’d had as a child. Affecting one in every 200,000, it has destroyed most of the neural pathways in my brain.
My condition was so rare, there was no treatment at the time to help prevent it getting worse. I felt alone, as if I was brushed to the side. Like a soldier left to die on the battlefield from their injuries.
I was left to face this disease with very little motivation from specialists to fight for getting my mobility back.
Knowing you have an untreatable disorder destroys your self-esteem. I felt as if my disorder wasn’t considered important enough to be regarded.
I had been very naïve after hearing my diagnosis, believing it would all fix itself. God put me in this mess, so surely he’d get me out. But, as time went by, year after year, I found everything harder and harder to do.
All through secondary school I was lonely. I felt no one could understand the pain I was going through. I was losing the closest person to me; myself. I didn’t know if or when I would get her back.
The only direction I was going was downhill, and it became more and more evident as the years passed. What started with a limp at 13, had now forced me into a wheelchair at 18. The one mobility aid I was adamant never to rely on was now a necessary part of my life.
I had no self-confidence and felt worthless and ignored.
It was unbelievably isolating to face this condition by myself. Yes, my parents were there for me, but they’d never dealt with anything like this before. I craved meeting someone who had been through similar events. I needed someone to relate to, who could understand the pain and hatred for such a situation.
I was alone and dealing with these emotions all by myself. I hated all the ‘could have’ and ‘would have’ opportunities that were fresh in my memory.
The one aspect that kept me holding on was hope. Hope they’d find a cure, or create technology to improve my situation. Hope that I’d find someone who made me look forward to tomorrow.
Music also played a major part in my life. It held me together and reminded me that other people were dealing with feelings too. I adored the songs that I could relate to, no matter how much they made me cry.
Hard to talk
I was very emotional when it came to discussing my condition and I still find it difficult to talk about as it reminds me of the loss and pain I went through. I felt like a helpless puppy when it came to my condition, I had no say on how, if, or when it took its hold.
In 2012, I met my current boyfriend, who is my rock, my missing puzzle piece. He’s my distraction from all things medical when it gets tough, although living with a rare illness is never easy.
Discovering a group on Facebook dedicated to patients with the same condition also helped me feel less alone. I’m now in a much healthier place regarding my mental health. Being able to connect with other people who can offer support is important.
Even though this is not how I envisioned my future, I have found friends who accept me for how I am. I’m thankful for not having to fight to live. Other illnesses exist that take the lives of many people.
Although I’ve been placed in unfortunate circumstances, I could have been dealt a worse hand. Like the saying goes, God only gives his toughest battles to his strongest soldiers.
This is Niamh ni Ruarí’s story. More of her writing can be found on her blog, My beautiful nightmare.